kluesyk Posted May 24, 2011 Report Share Posted May 24, 2011 My neurologist wants to send me to Mayo due to my increasing muscle weakness. She is really trying to help me. Has anyone had a good experience with help with the POTS? I also have autoimmune+endocrine failures, flushing and increasing muscle weakness. She is looking into referring me. Anyone found a good doctor there or am I wasting my time?Saw a new endo today due to thyroid nodule that is growing and increasing hoarseness. He is going to send me for a biopsy, but not before telling me" Wow you have had lots of tests, wouldn't you like to save all that money?" I thought it was a trick question, so I said "of coarse!", and then he said "Just stop getting them!"You know there are times......I finally said" Well I guess I am still hoping that someone will find a way to help me, my life is so changed... if this was your life, you wouldn't say that". He then said he would go ahead and order the biopsy.....We are SO SICK, and have to be upset by rude, unthinking doctors. Oh well....I think of myself as a duck floating on a pond, the downpours can come and I can even go under a few times, but my skin is waterproof....I have to let it all roll off.....I shall not sink.Sorry for the rant.....sometimes happens after a doctor visit. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted May 24, 2011 Report Share Posted May 24, 2011 Oh goodness do I feel you. On another post I described my psuedo MRI appt. this morning. It is sooooo Frustrating!!! I think I would be fine if someone would just do the tests to figure out what the heck is wrong. Even if they didn't have an answer, at least we have done the tests and confirmed. Now I feel like we are just putting a Band-Aid over the problem with the MEDS. that work only sometimes. Just wanted you to know that you are not alone and hopefully someday soon we can both get some answers. Hang in there and I'm sorry (don't know if it helps) Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 24, 2011 Report Share Posted May 24, 2011 I went to Mayo in Rochester and was seen by Dr. Fealey. He was incredibly comprehensive, really listened to my issues and tried to address each one of them. I spent almost 2 weeks there. We traveled from Oregon and stayed at one of the hotels close by, and all of that was spendy. But totally worth it. I rely on the test results I got from there still to help my docs determine my treatment now, even 2 years later. Quote Link to comment Share on other sites More sharing options...
DBP4620 Posted May 25, 2011 Report Share Posted May 25, 2011 that really stinks about the endo im sorry to hear that! I'm not sure if you have given any thought to the Mayo in Scottsdale but I would highly recommend Dr. Brent Goodman there. Aside from the wait being MUCH shorter than rochester I found Dr. Goodman to be extremely comprehensive and caring as well as being very knowledgeable about POTS and dysautonomia. Dr. Goodman was not afraid to order the test that needed to be ordered and was able to get a whole picture of what was going on with me which I really appreciated. Good Luck! Quote Link to comment Share on other sites More sharing options...
Neshema1 Posted May 25, 2011 Report Share Posted May 25, 2011 I've had a bad experience at Mayo in Rochester. I heard goodman in AZ is good. Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 25, 2011 Report Share Posted May 25, 2011 I had a good experience with Mayo in Rochester. I waited about 3 months to be seen. They were the only ones who would help me when normal treatments weren't working for me. Quote Link to comment Share on other sites More sharing options...
kayjay Posted May 25, 2011 Report Share Posted May 25, 2011 Mayo helped me more than anyone else could. I went to see Dr. Sandroni but saw Dr. Fealy. I have been twice and would recommend it to anyone. Mayo is ranked #1. I have also spent quite a bit of time at Johns Hopkins. Less than an hour from my house. It is ranked #2 and I hope to NEVER GO back there. I would rather make the long trip to Minn. If you want to message me please feel free. I will share with you everything I know. Best wishes but know that people travel from all of the world to go there. They developed most of the testing used to diagnose Dysautonomia at Mayo. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted May 25, 2011 Author Report Share Posted May 25, 2011 Thank you everyone for your help. I am still upset today from the dr appointment....can't believe he said the things he did. Makes me VERY apprehensive to see any more doctors. I don't think I can take any more emotional trauma...I have a hard time getting what they(dr's) say to me out of my head...I have a VERY strong sense of what is right and wrong...and some of these doctors really need to go back to school to learn how to talk to their patients.I will try and research the drs at Mayo....Arizona is pretty far away, but Dr Goodman sounds good.I am so tired and so sick.Thanks again for your suggestions. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted May 25, 2011 Report Share Posted May 25, 2011 Thanks Kluesyk for this Post and thanks to everyone who replied!!! Your knowledge is very much appreciated Klueayk...keep your chin up!! Only You know what is going on in your body. Keep the faith and try to find someone who will listen to you, please. I'm sorry you are not feeling well but hang in there. If you need someone to just talk, or PM I am always available. Quote Link to comment Share on other sites More sharing options...
houswoea Posted May 25, 2011 Report Share Posted May 25, 2011 If it helps, for a long time, all my doctors kept telling me I was just crazy. I even started seeing a psychiatrist.When I was at Mayo, my doctor said "Just because we don't know what's wrong doesn't mean you're crazy. You're not crazy. It's our fault we can't figure it out."He was the first one to say that to me.I found it was easier to get in with a regular neurologist and then get referred elsewhere in the dysautonomia specialty than to wait for the POTS guy. Quote Link to comment Share on other sites More sharing options...
DBP4620 Posted May 26, 2011 Report Share Posted May 26, 2011 Arizona is much further than Minnesota from me on the east coast but I guess as long as your flying? The pros to Arizona taking Doctor Goodman out of the equation is that it is much smaller then then Minnesota. There is one main clinic building which is 4 floors and has most of what you will need including the autonomic laboratory, then they have the main hospital building and the hospital clinic building. It is definitely manageable and if you do need a wheel chair while there they have people that come get you with a wheelchair and push you around to your appointments. It is also much quieter in the late spring and summer as the snow birds go home. One thing I can say about Dr. Goodman is that he will definitely respect you and not think that its "all in your head" and will do testing to find out exactly what you do have. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted May 26, 2011 Report Share Posted May 26, 2011 Another big vote for Dr Goodman in Scottsdale, AZ. I live in Tucson, so luckily it's only a two-hour drive. If he finds anything that he thinks warrants another specialist to check on, he refers you to the appropriate department/doctor. That's how I found out I have a blood clot in the right atrium in my heart. Now they're treating that in the cardiology department.By the way, Goodman started out here in Scottsdale, relocated to Rochester (MN) and then returned to Scottsdale about a year later because his wife couldn't stand the cold! Quote Link to comment Share on other sites More sharing options...
avais1 Posted May 27, 2011 Report Share Posted May 27, 2011 I saw Dr. Low at Mayo Rochester - great experience, but that was back in 2003 and 2004. Quote Link to comment Share on other sites More sharing options...
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